Advice please

[margiebell4]

After having PMR for 6 years I finally reduced to 0.5mg and then zero. I began to have discomfort again but didn’t know if It was OA as I also stopped taking naproxen following a total hip replacement.

I have been seen by the physio at my GP surgery and he’s referred me to a rheumatologist with suspected RA. He said lots of people with PMR also have RA. He’s going to speak to my GP about whether I should go back on naproxen or prednisolone while I wait for the rheumatologist appointment, which could be 6 months or longer.

He asked me if I’d posted a question to this group, he thought I might get better advice I think!

I’m totally confused now!

[SnazzyD]

Simple elimination perhaps? What about try the Naproxen first to see what that does. Naproxen won’t help PMR so it might help to see how much is due to factors other than that. Might help the rheumatologist make a decision and preempt, “why don’t you try Naproxen first…”. See how you go and if it really doesn’t help, perhaps the GP might agree to some Pred given the long wait.

[margiebell4 in reply to SnazzyD]

Thanks, do you know if Pred helps OA pain? I’m wondering if that would work as part of the elimination process.

[SnazzyD in reply to margiebell4]

It can do in that others often complain of having a bit of a holiday from their OA pain on higher doses of Pred and on coming back down they feel the old niggles coming back. As to what degree is probably down to the person and the extent of their OA.

[PMRpro Ambassador]

My view is that you are probably like many others - a very low dose of pred is enough to keep the inflammation under control and so it never builds up again to a level that causes symptoms. It really is not unusual for sometone to be fine on 1mg or even less - but zero pred is simply doesn't work! It is said that more than 50% of PMR patients need pred for more than 6 years, albeit mainly at a low dose. A large number still require some pred at 10 years although of course it isn't possible to say if it is the PMR or a lack of adrenal function

IF it is PMR inflammation that is building up it is unlikely to respond to Naproxen and will steadily increase. Other things would probably remain steady. I do wonder why he thinks RA rather than persisting PMR - Prof Dasgupta told us last year he often keeps patients on 2-3mg long term as it reduces the rate of relapses. I think it is worth trying to get lower - 1mg may be plenty and be associated with fewer adverse effects than Naproxen.

[HeronNS]

I have a similar confusion. I have now decided that I do continue to need a very low level of pred, having had an unsuccessful flirtation with zero. However a lot of the pain and stiffness I experience is relieved by aspirin. I try not to take it often, and lately it is often just as a test to see if it will work or do I need more pred. Invariably it has worked and I'm keeping the pred dose down. It's not good to take painkillers as NSAIDs interfere with cartilage renewal - and pred isn't great for that either, I take glucosamine and that has probably helped a lot, and lately started using Flexiseq on my knees.

In your shoes I think I'd try your painkiller of choice and see whether it is sufficient. If it is, do try not to have to take it every day for the reason I stated. If it is not sufficient, then most likely PMR is still simmering and you may only need a very little pred once you've tamed the dragon again I was okay back at 2 mg after my zero adventure, for many months, but then had a real PMR flare I'm now finally recovering from. Have not in the seventeen months or so since zero pred been able to get back to as little as 1 mg, but for some time I was fine at 2 and will be happy if I get back there again (right now tapering very cautiously from 4 to 3.5).